Terminology May Affect Treatment Choices
“You won the scholarship!”
“Will you marry me?”
“You have cancer.”
A word can change your life. One minute college seems impossible; then you find out you won a full scholarship. A word of love joins two lives together. The word “cancer” turns your dreams to dust.
The word “cancer” is powerful, so in a recent study, researchers wanted to see how terminology might affect the treatment options people chose. Doctors have begun to recognize that we may have been overtreating ductal carcinoma in situ (DCIS). In this condition, cancerous cells have not left the breast ducts, so non-surgical options like medication or active surveillance may be appropriate for some women rather than a lumpectomy or mastectomy.
Researchers at Massachusetts General Hospital asked 394 healthy women without a history of breast cancer to choose one of three treatments for a hypothetical condition. When the condition was called “non-invasive cancer,” 53% chose a non-surgical option. When the term “breast lesion” was used 66% said they would go with a non-surgical treatment. Calling the problem “abnormal cells” raised the choice of a non-surgical treatment to 69%.
Of course, these women were not facing a real-life choice. They were dealing with imaginary scenarios. Still the powerful word “cancer” increased the chances that they would want surgery. The researchers concluded, “Health care providers who use 'cancer' to describe DCIS must be particularly assiduous in ensuring that patients understand the important distinctions between DCIS and invasive cancer."
It seems to me that we need to watch our language throughout the cancer experience. I’ve heard women say, “I’m off for my poison,” when they go to chemotherapy. “Poison” and “healing” don’t go together in most of our minds. It is common to use the phrase “slash, poison, burn” to describe the current state of breast cancer treatment.
Words affect our perceptions of what is happening to us. Before my surgery, I had been reading about mastectomies. I read quite a bit about how the newer modified radical mastectomy or breast-conserving lumpectomies are so much better than the previous “disfiguring butchery” that women were maimed with during the days of the radical mastectomy. Thank goodness I was scheduled for a modified radical.
After my surgery, the doctor explained that there were two previously undetected tumors sitting on my chest wall. “I took everything I could,” he said. Somehow I assumed that the “everything” still fit in with the definition of a modified radical mastectomy. But when I read about reconstruction using the chest muscles, I would get confused. I didn’t feel any muscles, just skin on bone. It was at least seven years after my surgery before I could finally admit to myself that I had a radical mastectomy. I hadn’t wanted to think of myself as disfigured, maimed, or butchered.
Because of the words I had been reading that described a radical mastectomy, I might have refused consent if my doctor had known ahead of time that I needed one. Yet in retrospect, I realize that his decision during surgery may be one reason why I am a 15 year survivor of inflammatory breast cancer when I have so many friends who haven't survived.
I don’t want doctors to tiptoe around the realities of our disease. There are days when we have only harsh words for our disease and its treatment. However, the words we choose do matter. Choosing the most medically accurate and hopeful words helps us see the possibility that the stress of treatment will work, and that cancer need not turn our dreams to dust.
“Terminology used to describe preinvasive breast cancer may affect patients’ treatment preferences.” August 29, 2013. Medical News Today. Accessed Oct. 23, 2013. http://www.medicalnewstoday.com/releases/265365.php.